Its less than a year since I was diagnosed with B12 problems and I get an injection every 3 months. Two weeks before it's due I feel that I begin to go downhill, not able to find words etc and the week before I could sleep for Scotland! I have lots of other health problems that cause fatigue but all "under control" at the moment. Should I ask for my injection to be brought forward to every 10 weeks instead of 12?
Following on from this post I asked my gp and she agreed to me having 10 weekly injections. Certainly didn’t reach the “I can’t find the word” stage so hopefully having the injections closer together will help. 👍🏻
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NanaFifi
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It does sound like you have a good case to ask for it at 10 weekly intevals. Just explain as you have on here your symptoms and how you feel in the run up to your regular injection. You never know your gp might very well be ameniable to increasing the frequency as it is just a couple of weeks. Especially as the injections seem to be working for you- up to a point.
In UK, people with b12 deficiency with neuro symptoms are supposed to have injections every 2 months not every 3 months.
When you were first diagnosed did you have B12 loading injections? The pattern of B12 loading injections is more intensive for those with B12 deficiency with neuro symptoms.
Info on UK B12 treatment can be found in
1) BNF British national Formulary Chapter 9 Section 1.2
It's possible to get own copy of BNF. UK GPs will very likely have a copy on their desk.
I have problems with pins and needles in fingertips and sometimes toes but I think that's down to trapped nerves due to RA. Only happens when I lie/ sit in certain positions.
I did have loading injections, I think it was 3 a week for 2 weeks?
One doctor referred to it as PA and another spoke about B12 deficiency.
There is a family history of PA. I am working under the assumption that I have PA as my treatment is the same as my mum's was.
"I am working under the assumption that I have PA"
Did you have an IFA (Intrinsic Factor Antibody) test? This can help diagnose PA but test is not always reliable and it is still possible to have PA even if IFA test is negative (called Antibody Negative PA).
Doc thinks pins and needles in fingers due to wear & tear of disc at bottom of my neck. To be honest I haven't mentioned my toes 😕 as that has just started recently and I had a fusion surgery on left foot which is where the numbness is most prevalent.
I dont believe I had an IFA test.
My memory is rubbish and has been for a long time! Before I started treatment I had a lot of problems with "finding" words, I thought I had the start of Alzheimer's!
Hi Nana. I am finally getting some relief and healing from doing self injections 2-3 times per week with Hydroxocobalamine 1000mcg. I have been diagnosed with pernicious anemia. I've been getting injections for 4 months now and I am finally starting to feel better. Every 3 months seems like an awful long time. Hopefully, your doctors can give you injections more often. Do you take sublinguals?
May also be worth getting your folate, ferritin and vit d checked. I found my symptoms returning much earlier than b12 injection was due. Further tests showed these were low and supplementing these has definitely extended time before I feel my symptoms return.
I get monthly blood tests done to check my liver function because of one of the drugs I take for RA and it was from these results that it was noticed that something was wrong. I had folate, ferritin and B12 test, folate and B12 were low and I started a course of iron pills and the B12 injections and I take a prescribed supplement of calcium and vit D. These haven't been checked again so that would be worth mentioning to my GP.
Bit confused that your folate was low but they put you on iron pills. I was prescribed folic supplements for the folate deficiency. Assuming not a typo in your message or i have misread it maybe worth seeing if your folate is still low and getting the supplement for this rather than low iron.
There is a simple solution to this as if you self inject and the GP prescribes a 5 ampoule pack per year that will enable you to bring your injection interval down to 10 weeks. Self injection may seem like a daunting prospect but it means you can do it to suit your circumstances and, if you are like me and my daughter, it doesn't hurt at all. We have found we can control such as foreign holidays very easily in this way and usually make sure we are well within the 'sweet spot' period so enjoying the trips much more.
I am off to see my GP tomorrow to see if I can get him to enable me to inject more frequently anyway as the neurological symptoms were not taken into account when I started 2 years ago and despite the assurances of one of the practice partners it was a folate probem are getting worse. If it is difficult to make them consider it then I will explore alternative sources of cobalamin and needles for myself.
GP or nurse have never brought up self injection but I can see the benefits. I inject Methotrexate once a week - pre-filled pen style, pretty painless so am not averse to stabbing myself
I'm finding it really difficult to work out what symptoms are caused by what illness at the moment - I have RA and Lupus, am hypothyroid and now have PA. I have shoulder problems, wear and tear in disc in my neck, bad knee and hip and so on and so on!! I'm to have my right wrist fused in September so the pins and needles could be coming from my neck, my wrist or PA!! I daresay I'll get there in the end!!
Very surprised you have not had an IFA (Intrinsic Factor Antibody) test. My understanding of flowchart below is that anyone who is symptomatic for B12 deficiency in UK should have one.
Some people on forum have had B12 injections stopped at some point in past and my personal opinion is that a confirmed diagnosis of PA makes it easier to argue for the reinstatement of injections.
There are stories on Martyn Hooper's blog about people who have had injections stopped and how PAS has helped them.
Have you got copies of your blood tests results? There may be something in your records about IFA test.
See "Access to Medical Records" in my post above.
"My memory is rubbish and has been for a long time! Before I started treatment I had a lot of problems with "finding" words, I thought I had the start of Alzheimer's!"
Memory problems are usually considered to be neurological and that combined with pins and needles makes me surprised that you are not on neurological regime for B12 deficiency.
Is GP aware of memory problems? I believe some people with memory problems due to B12 deficiency get it written off due to ageing, onset of dementia etc.
There are some heart-rending stories in the book "Could it Be b12" by Sally Pacholok and JJ. Stuart, about people who developed dementia type symptoms due to B12 deficiency when it was potentially reversible if caught early enough.
There was a time when I truly believed I was heading for dementia and I can certainly relate to word finding difficulties. B12 treatment has improved my memory.
I haven't had nitrous oxide in the last few years and if the IFA test should have been done then I assume it has been. I put my trust in my GP to do the appropriate tests and I don't always remember exactly which ones have been done - I've had so many!!
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